Dealing with a teenager diagnosed with Evans Syndrome, a rare autoimmune disorder with no cure.

Tuesday, February 2, 2016

New meds

It's been a while! Too long! Life has been getting in the way of my thoughts.

Ric is out of remission and facing the ugly face of Evans again. I don't know why I thought "oh, the next time will be easier cause there is no element of surprise. Now, we know what we are dealing with." Well, not quite. Yes, we know that he will have flare ups and that he will be in remission, but the emotional side of this just sucks!

It all started with enlarged lymph nodes, again. Then came the mouthsores. Holy mouthsores! Even the dr had no clue where they were coming from. He did a culture to rule out bacterial infection. All clear! Nothing! Nothing! He wanted to rule everything out before he said "it's just one of the things he will have with Evans". ES is a diagnosis of exclusion and it seems that every time it flares up they will look for every other explanation in the planet before they tell us it's because of Evans.

The mouthsores were terrible. He couldn't eat properly or smile properly. We ended up putting him on prednisone. He also had a magic mouthwash his dentist (with heme/onc approval) prescribed him and pink honey. Yes, we applied pink honey on the mouthsores with a qtip and they started healing. Maybe it was a combination of all things!

Sirolimus is the med they give patients who have had an organ transplanted into their bodies. Apparently it gives ES patient's immune system another perspective. It tricks the immune system. All I keep thinking is "at least it's not chemo". Our dr was explaining to us that research is now showing how Rituximab is not as safe as they first thought. So they won't do that unless strictly necessary. Lovely! He's had 4 rounds of that! This med works slowly so they are assuming he will be on it for at least a year. Numbers haven't been all so great since he started this medication. Apparently that is to be expected because the med works slowly. His next tests are in April, we'll see.

Mouthsores are still popping up every now and then. It highly annoys him, especially now that he has a girlfriend. But, he has to deal with it. This time it has been harder on him. It pissess him off that he has to deal with Evans. I hope one day he realizes it has also made him stronger.